A whistle stop catch up…

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Been writing like a batshit from hell since Christmas. Weekends and evenings, just thundering away on the keyboard in the back room. Bess often keeping me company on a cushion by my feet. Sometimes not. The book contract is being thrashed out. I’ve pretty much reached the proposed word count; it’s a question of trying to make a tale that doesn’t typically float many boats, into a page turner that grabs attention and makes the likes of LB (Danny Tozer, Nico Reed, Thomas Rawnsley, and many more) human.

I’m on it, with remarkable support.

Other stuff that has been happening (in random/(reverse) order…)

  • The NMC only communicate gibberish so fuck knows.
  • The GMC tribunal date for Dr M has been set for two weeks in August.
  • The HSE are hoping to share further information in the next few weeks.
  • We’re getting an update from the police on Friday evening.
  • David Harling is in the final stages of his fourth animation… this one will include voices… [howl].
  • Caiolfhionn Gallagher was sworn in as a QC this week. Something so unusually right, something so deserved, and so blooming reassuring in terms of the ways in which she will, undoubtedly, continue to use her ferocious intellect, human rights expertise and extraordinary empathy to fight/right as many wrongs as she can in her waking hours.

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Reclaiming mother blame…

Revisiting the mother blame stuff again this weekend. For a mix of personal and academic reasons. On a fairly superficial first trawl (that is, the stuff immediately to hand) I came up with 17 statements explicitly blaming me in various ways for what happened.

I’m trying to work out some way of presenting these words creatively as the words themselves seem to lose meaning. This has involved some fairly absorbing messing around which is quite empowering. Cut and pasting, drawing pictures, stretching and recreating text. It unexpectedly allows a reclaiming of the statements and some power to subvert them. They are no longer the blunt and unthinking (at best) [cruel] things health and social care professionals have said about me (or so many other mothers/parents).

These things can’t be said about families/patients/people without us appropriating the words. And doing what we want with them. Who knows. This may make it less likely that ‘professionals’ thoughtlessly regurgitate them in future.

Revisiting these statements, the horror remains as raw. The pain and rage they cause untempered. I still cannot understand how anyone involved in LB’s death (and most of these 17 statements were made post publication of the Verita review which clearly stated LB’s death was preventable) can possibly think blaming his mum is, in anyway, acceptable. Even if you’d met me (I’ve met three of the people who made the statements so far uncovered) and I was/am the nightmare portrayed, this has nothing whatsoever to do with the health and social non care provided to LB. Even if I was/am a combo of May and Cameron, with a dose of Farage, Trump, Muntz from UP, Gove and Nasty Nick from vintage Big Brother, LB had a right to good and appropriate health and social care. Simple as…

[I can’t  believe I’m actually typing these words but given the persistence of health and social care inequalities, I just despair when I think of how many other people/families must have fallen foul of arrogant, ignorant, judgemental, incompetent, myopic, point scoring, thoughtless professionals with way too much power in their grubby paws.]

I’m left, on first reflections of this mother blame trawl, partly focusing on who said these things. Sloven and Oxfordshire County Council peeps (and I would assume private providers if relevant). But more importantly, those who didn’t say anything in response to them. These statements are not made in a vacuum. They are shared, agreed and circulated, either by email, in reports, letters and so on. The various Freedom of Information and Subject Access Requests that accompanied them revealed no countering, reflection or challenge. This bile is accepted without challenge. No whiff of this:

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Mother blame remains live and kicking. I can only think it’s up to us to start reclaiming it.

And for those who should know better but clearly don’t, some baby steps to more humane engagement:

  1. First and foremost, remember that a person has died a preventable death. They have died and they shouldn’t have. [Howl]
  2. Try to imagine (and keep imagining) what this must feel like for those who loved them. [Imagining it happened to someone you love is a very basic step here.]
  3. When you receive any documentation about this person’s death (emails, letters, draft reports, briefings), sitting in meetings when this is discussed, or chatting over the photocopier, keep remembering this is a person. A person who shouldn’t have died [Revisit step 2].
  4. Develop a careful close reading of any health and social care missives about the unexpected or preventable deaths of people in health or social care. Learn to identify/recognise typically defensive, over the top, and cruel blameworthy statements about these deaths and call them out for what they are.
  5. Refuse to be party to the callous, inhumane and brutal annihilation of family concerns.

Basically. Just be human.

Johnny Rotten and the legitimacy of anger

Rich met me at the bus stop after work yesterday. I was feeling a bit low. We wandered home across the London Road.

“You seem a bit despondent…”
“Yeah. I am. Fed up with raging. And the continued shite that just doesn’t change. Not sure I can bear another year of being so angry... I’m weary of being constantly angry.”
“That’s what happens.”
“What?”
“People get worn out. They stop being angry. But it’s right to be angry. Anger drives a refusal to accept the low bar, the unacceptable. It drives action and critical engagement. Without it, issues are reduced to vague problems too easily dismissed.”
“Hmm…”
“Like Johnny Rotten said, anger is an energy…”

Minutes after getting in, an old mate turned unexpectedly. Her son a year or so older than LB. We had a catch up over mugs of tea and a chunk of Christmas cake. She filled me in on the horror that has been her family’s recent experiences of adult services. Not a pretty story. But it so rarely is. We reflected on the way in which 18+ years of loving and bringing up our kids (along with their sisters/brothers) can be summarily dismissed or problematised by health and social care (with the eye watering irony they offer nothing in its place). The misuse of power and erasure of love and more (the right words don’t exist) too often, just extraordinary.

Before she left, she said;

Do you remember when N and LB were young? And we were so optimistic about the future…

Blimey. I’d forgotten. We were. There was a group of us parents. A right old bunch of budding agitators/activists [just mums really…] All with kids the same sort of age. So utterly convinced we could change what we thought was an already changing world to create rightful space for our kids. To live the lives other people lived. I was shocked to remember this, and that I’d forgotten.

Later, one of LB’s school mates posted two photos on Facebook from years ago. LB was sitting among the small group of kids. He looked so chilled in one and smiling, as he saw the camera, in the other. It was clearly before the fake, fixed cheesy Wallace grin period which lasted a good year or so. Until my relentless photo taking became commonplace again.

Rich is right. Anger is necessary. Or you get sucked into the malaise that is the myriad words/excuses/bullshit/reviews and recommendations that health and social care bods endlessly come up with. Non existent change… what’s about to happen. And never does. At best, a kind of hope soup. That never leaves the kitchen. And feeds no one but the cook.

So 2017. Another year. With anger. And focus on brilliance. The remarkable. And humour. That rightful space is still there, somewhere. We just have to collectively, and persistently, nudge the crap out of the way. And never stop saying this is simply unacceptable.

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Bindman’s published their first ever annual review today.

Goggles, faeces, pricks and shoes

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Oh dear. My pre-Crimbo sunshine has gone with the advent of 2017. Waiting for accountability still. Some random thoughts and reflections here. Apologies for any repetition. We’re getting mighty weary waiting. (Actually worse than weary, but there you go.)

First, a brief recap of some very key points:

2017

 

If someone told me back in the day we’d still be waiting for accountability in 2017 I’d have refused to believe it. We’re talking about the NHS, for goodness sake. Of course it wouldn’t take years…

Such naivety.

Like many other families, we’ve been consigned to a half life (at best) since LB’s death. Forced to ferociously police and push for interminably slow, and too often reluctant, processes to grind on. Fun, the small stuff in life, largely shelved. Work a distraction rather than the focus it used to be. Our lives have been transformed/brutalised because LB was not seen as fully human in life or death. And because he died in NHS care.

I was having a twitter exchange about patient safety/bereaved families the other day with a well known and influential GP. S/he refused to listen but tweeted a cloying ‘If you prick us we bleed…‘ Gordon Bennett. I was quite proud I wandered away from that exchange with no whiff of a swear or ten.

The comment sheds a bit of light though… About senior health and social care bods who seem to be pathologically unable to put themselves anywhere near the shoes of bereaved families. People so firmly focused on their own shoes (careers, status and the like) with the coatings of arrogance (and sometimes immaturity?) that seem to come as a perk of these positions.  People with the power to both discredit and further alienate families pushed to extremes through the heady combination of grief and injustice. People who should, really, know better. And do better.

Here’s a thought for the new year. Why not ditch those goggles, park your shoes to one side for a bit and give what happened to LB, and others, proper scrutiny and attention. Read the extraordinary and repeated unwriting of scandals, the limp dicked excuses and half baked non explanations/obfuscation in statements, reports and reviews. Look at the ridiculous time that’s taken to never get anywhere. Stop worrying about pricks and try to imagine what it must be like to endure life after the preventable death of beloved family members in NHS care. A particular hell with no end in sight. It may well be a cathartic experience. You never know.

It certainly can’t hurt.

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Raising a large glass of something…

Received a lovely Crimbo email yesterday which made me – blinking back those pesky tears – think, yep. We’ve rocked this gig. All of us. Here’s an extract from the email and some ‘highlights’ of the year:

I hope you all get a chance to reflect on your achievements this year:

  • real justice for Connor – forcing the NHS to acknowledge their failings and removing the CEO who set the culture that created so many problems for your family;
  • the prospect of real, meaningful change for so many other people within the NHS, in particular the families who’ll now expect so much more from the health service;
  • a new (albeit extremely belated) conversation about the lives of people with learning disabilities, with at least a path being set for how they can get closer to being treated with equality and respect.

There are undoubtedly many battles you’ll still want to fight, and plenty of people who need you to fight for them.  But I hope that over a large glass of something, you appreciate that you really, really are achieving Justice for Laughing Boy.

Jan: Campaigners and the gingers attend the Sloven Board meeting.
Feb: Jeremy Hunt meeting with Rich, Deb Coles and Andrew Smith, MP.
Mar: 12 Angry Women, Brighton, featuring ‘A Mother’s Song’ by Edana Minghella.
Apr: Mike Petter, Sloven board chair resigns; Simon Hattenstone wrote about LB in the Guardian mag; the CQC issue another warning notice to Sloven; revelations of Sloven financial irregularities.
May: Rebel governors meeting
Jun: Performance of A Child of Our Time, Warwick University; debate about Sloven governance in the House of Commons led by Suella Fernandes.
Jul: Talentworks  ‘Going Viral’ and exec salaries scandals hit the news.
Aug: Katrina Percy steps down from CEO into a made up post on the same salary.
Sept: BBC air Broken Trust, about Sloven failings; Tim Smart, interim Board Chair, resigns; Chris Martin removes the Talentworks website and pulls out of the Sloven contract.
Oct: Katrina Percy  resigns with a £250k pay off. The made up post remains unfilled; #JusticeforLB, Deb Coles and Charlotte HaworthHird win a Liberty Human Rights award.
Oct-Nov: #CaminoLB wondrousness.
Dec: Publication of the CQC Deaths Review; #JusticeforLB exhibition and day of celebration, Aviles, Spain; the GMC refer LB’s consultant to tribunal; the Health and Safety Executive appoint counsel to get specialist legal advice on complex points of evidence.

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Here’s to LB and all the other dudes who were (and continue to be) let down so badly.

Oh dear Mike

Oh dear. Mike Durkins, National Director for Patient Safety at NHS Improvement (my arse), made this statement about the CQC deaths review;

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There is so much so wrong with this statement, not least Durkin’s apparent indifference or obliviousness, to what are, often, preventable deaths. What really makes my jaw ache though is his bizarre reference to families of learning disabled and mental health patients. Mike, all families should be properly treated and supported when a loved on has died unexpectedly. Just like all unexpected deaths should be properly investigated. Singling out these families suggests a complete misunderstanding of this latest scandalous unfolding.

As Patient Safety Director you really need to be focusing on why certain patients are dying (consistently) in the first place. [And, if you need herbs off the street to point this out to you, you should probably have a long, hard think about whether you are in the right job.]

Also, before you make a leap to global standards of excellence, you might want to see what’s going on in Spain and their response to the way in which the NHS treat certain members of society. Strikes me, you could learn a thing or two.

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Hoovering stuff and traces…

Having a long, very overdue, clear out. It’s an odd one. Bits of LB stuff under, or in, so many piles, boxes, drawers. Tugs, wrenches and memories from the past interrupt the work of sorting. Pulling out one bookshelf reveals 10-15 years or so of a thick fluff. [Sorry]. A strangely soft, dark grey, uneven terrain. Somehow and randomly coating the top half of the skirting board. Sort of gross. But bits of LB. Of Chunky Stan. Of all of us…

It was gone in seconds with the hoover. Traces disappeared.

Odd photos and pictures have turned up. I don’t know who’s with LB in this prom photo (now on the fridge). It’s a school pic. And I’ve not deciphered his film announcement below. The cast includes Dan, his beloved dentist, and Tom, who may be Tom Chaplin from Keane or bro Tom. Depending on when it was produced. He’s rubbed out some of the drawing which was unusual. Or maybe I’m trying to wring too much out of these drops of magic. A way of being with him again. Fleetingly.

LB stars and directs, of course. His casual confidence on display in both pictures.

I smile, cry, chuckle, rage and feel enormous and unchanging love. I bloody love that boy.fullsizerender-15

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Humanity, value, love and sunshine…

Today, as part of the International Day of Persons with DisabilitiesLearning Disability England and Spanish friends held an event in Aviles, Northern Spain, celebrating #JusticeforLB and all those who have died through neglect and indifference. Stitching, artwork, music, dancing, fun and so much more.

Just brilliance…

I felt a right old pang seeing the #JusticeforLB bus/quilt in twitter pics. And reading the shock, outrage, sense and warmth expressed by local kids, self advocacy groups and others…

Valued members of society. Blimey. ‘Reach for the stars’ type aspirations that seem to firmly remain the stuff of dreams here. Despite the continued and brilliant efforts of some/many.

Still. We gotta recognise steps made and there have been some. First, the General Medical Council (GMC). Having proceeded at a snails pace (over 2.5 years so far) in the investigation of Dr M, we were told we’d hear the case examiner decision this week. Sitting at my desk earlier [grey sky, gloominess and an all to0 familiar feeling of delay dread] I steeled myself for another weekend without news.

Then an early afternoon email. Dr M is being referred to a tribunal hearing.

A few hours later, a comprehensive (and spontaneous) update from the Health and Safety Executive (HSE) beautifully headed ‘Connor’.

If you’re embroiled in a serious investigation involving a preventable death [howl], your priorities may well be on the meticulous steps involved in evidence collation/examination. Keeping families informed may seem a less relevant, smaller, almost inconsequential part of the process.

It ain’t.

Keeping families informed demonstrates:

that beyond loved children/sisters/brothers/grandchildren/nephews/nieces/friends are valued.

serious consideration and scrutiny of what’s happened, allowing/enabling slightly easier rest in a harrowing (possibly lifelong) space.

a basic, deeply warming, and too often missed, humanity.

Thank you. To the GMC, HSE and ongoing Spanish based magic. For shining light and sunshine on the way forward.

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You can join, contribute to and keep up with Learning Disability England for £12 a year.  

 

 

The curious incident of the earlier death in the bath

In June 2006, HC, 57, died unexpectedly in the same bath that LB died in. Days after two ECT treatments he was unable to consent to. This emerged during LB’s inquest in October 2015. The coroner, who was clearly surprised to hear about the earlier death requested statements from the key three people involved in HC’s death.

  • The student nurse present in the bathroom

Once I had H supported I managed to pull my alarm, whilst at the same time shouting for assistance. At that point a member of nursing staff entered the bathroom, it was a female member of staff but I cannot recall who it was, simply due to how long ago this incident occurred. I can however recall that [nursing manager] followed that female in to the bathroom. It was approximately 10-15 seconds from H starting to have a seizure to other staff members joining me in the bathroom. By the time they arrived the water was drained and H was still in the bath and [nursing manager] told me to leave the room, which I promptly did. I understand that he did this purely because of my age and experience and he felt it was best to be away from what was happening to H. I did not see what happened next and never saw H again.

  • The nursing manager 

At the time of the incident I know I was not on the Unit.

Later in his statement he says:

I am not sure if I arrived there before Dr J or after but she went into the bathroom and assisted in trying to revive patient. I also cannot recall whether paramedics were already present when I arrived at the ward or whether they arrived after.

  • 3. Dr J (who phoned me the day LB died)

As the attending doctor, I pronounced HC dead.

Later in her statement she says:

On 29 June 2006, I received a phone call from the HM Coroner’s Office asking me if I was prepared to complete and signed the Part 1 of HC’s Death Certificate as I was the attending doctor at the time of his death. They called me again after 15 minutes and informed me that the HM Coroner was not going to ask for a postmortem examination and open an inquest. They informed me that HM Coroner would sign the Part II of the Death Certificate.

The 2014 Sloven ‘investigation’

Another Sloven psychiatrist was tasked with finding out more about HC’s death in 2014. He wrote to the Sloven Clinical Director on March 25 stating:

[Dr J] confirmed that there had been a death some years before Dr M’s appointment. [Dr J] relayed that the circumstances were different in some respects to the epilepsy related death last summer, but similar in that an inpatient on STATT had a seizure in the bath. An attempt at resus followed but it was complicated by the difficulty staff had extricating the man from the bath. He died soon after.

On May 13, the Sloven ‘inquiry’ concluded:

As this was an unexpected death of an NHS inpatient it was reported as a SIRI. There is no evidence of an RCA being undertaken. The Coroner had pronounced the death as natural causes.

This is how you erase a life and a death in full view. Particular lives and deaths. Those that don’t count.

The CQC, Ford escorts and failings

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Oh dear. Andrea Sutcliffe, Chief Inspector of Adult Social Care at the Care Quality Commission, has written a blog that makes my eyes repeatedly blink. And my brain slowly and repeatedly turn and churn. Chucking me back to days of car sickness and towel caught vomit on the back seat of a Ford escort. Here’s a walk through…

Writing about the Panorama programme shown this week documenting abuse at a residential home run by the Morleigh Group. [I’ve not watched the programme. I need to develop guts of steel to do so.] Sutcliffe is both defensive and distancing in her ramblings. 

She kicks off in the first paragraph with the statement “We warned [in a report] that adult social care is approaching a tipping point…” Mmm. A better start, given the content of the Panorama programme, might have been something along the lines of “I’m horrified that such abuse continues to happen in care provision in the UK, despite our continued efforts… We clearly need to do better.”

And continues: “The Panorama footage was not shared with the CQC in advance so I watched like everyone else.”

Blimey. Not sure what the point of this statement is but it doesn’t half ring some serious ‘queen of the land’ bells. A moment or two of self reflection (or a good mate to pull you up on these developing tendencies) might be in order… 

Sutcliffe found that “two moments in particular made me despair”.

Phew. It wasn’t that bad. Only two moments. Allowing reference to the mum test.

“That could have been your mum or mine…”

This was followed by a remarkably weak defence of CQC actions around the Morleigh Group:

“these are services we have been worried about for some time; we had kept them under close scrutiny, inspected regularly and set out what they needed to do to improve through our reports and enforcement action”.

‘Worrying about’ services you know to be failing really ain’t a robust defence. And, clearly, close scrutiny and regular inspections aren’t working. These are people’s lives. A fact that an entire gamut of senior NHS bods apparently still do not get. I ‘worry’ about getting to a meeting on time. About meeting funding deadlines. Not about people (residents) being brutalised.

There’s a muddled and confusing tale of inspections before and after receiving info from Panorama and the (necessary) identifying of “a serious decline in quality”. The CQC never at fault. Failing services brought to public attention by the actions of public and/or journalists have typically ‘just declined’ between news breaking and the previous inspection. Removing any need for scrutiny of the inspection process and what might be missing in terms of identifying failing practice the first time round. Before people are brutalised. Or worse. 

The CQC role section is a cracker. Beginning with unqualified condemnation of the Morleigh Group. Of course. The responsibility lies with them. 

cqc-roleThen the bizarre statement ‘But it is not unnatural when dreadful things happen in the sector’. ‘Unnatural’?  Eh? How far have senior CQC staff become detached from reality?

The following paragraph is also deeply concerning.

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Setting clear expectations? They were kept under close scrutiny? Sigh. The Morleigh Group failed. The CQC failed. There is no wriggle room. Bleating about working hard while failings continue is deeply offensive (and makes utter mockery of the mum test).

Sutcliffe continues to dig a deeper hole. Including an extract from a ‘fairy tale’ letter from a punter which rings even louder alarm bells about CQC processes.

cqc3‘I think I should give you a resident’s viewpoint…’ ‘Recovering from the shock’? ‘Right the wrongs here… ‘ Eh? Really? I’m trying and failing to imagine the concerned ‘resident’, sitting in her bedroom, pen poised, reflecting on how much better life is now staff no longer do ‘wrongs’ to her and other ‘residents’. Nah. I can’t.

The overall message of this ill judged post: it wasn’t the Chief Inspector of Adult Social Care or her CQC kingdom what done it. The failings lie firmly with the provider. [And we all know, sadly, they ain’t an outlier.]